March 2009 Rads Group?

Jeanne_D

Hi!  Yes, it was a gorgeous day here today too.  Hubby took off from work early and we took the bike out and just rode around in the country.  Stopped along the way in a lil meadow..it was really cool.  Felt like kids again!   

Well hope you all have a wonderful day tomorrow! 

Mary22

Hello all just checking in to see how everyone is doing. Nelia, how are you feeling?

Take care all have a great day.

SusieMTN

Boy just got back from seeing my Oncologists, gosh do I love these two!  He told me the redness was not a recurrence, and my wound breaking down and opening up is not that unusual.  Put me on antibiotics and cortisone cream.  Redness is just Radiation Dermatitis, (I had a lot of radiation due to my diagnosis and it is just taking me longer to heal from it).  It is so wonderful to have doctors that you completely love and trust.  What a relief!!!  

Here is a tip from one of my nurses cut off the top of a man's T-shirt like under the arms, it has to be small so it is tight like a tube top, and wear it under your bra, cotton T puts a barrier between your red radiation skin, and the bra and form.  The netting like material on the pocket side was irritating my red skin, Works great! 

Mary22

Good for you Susiemtn.

Rachel_BC

great news susie - what a relief!!!!  yes, I have been using cut up t shirts from the beginning, and now I still have to use them to prevent rashes underboob.

what a wonderful thing to have oncologists you love and trust! 

Mary22

Hello ladies, hope eveyone had a good w/e!!!!!

nelia48

Hi, Mary!  Always glad to hear from you here!  I had a good weekend.  Did NOTHING!  Made some baked ziti that was good, though!

Susie, great tip!!!!  I was wearing men's undershirts, but never thought to wear one UNDER the bra.  Duhhhhh!!!!!

Saw my oncologist today.  Good visit.  He reassured me that the lump I felt was nothing and that there was nothing on the PET scan.  He did surprise me, though, when he asked if I had ever thought about the lap band surgery for losing weight.  He said the reports coming back are "amazing" and "fantastic" as to it's success rate and that I should consider it.  He knows how I'm struggling with this, and so far, seems like a fading dream!!!!!  Has anyone had it done?

I had to have my port flushed today, too, and I asked him when I could have it out.  He bluntly said, "never!"  Then went on to say that realistically, I have to face the fact that there is a "very good chance" that the cancer will return.  That was the one dismal part of my day.  I think I knew that from the beginning.  It's just that you fight so hard and go through so much, and to hear that doesn't make me feel like much of a winner with it all.  I hate the fact that this is all just a crap shoot!

Rachel_BC

Wow, Nelia, did he graduate from the Marquis De Sade School of Oncology or what?  Like, OK you knew the odds for recurrence, but if you go 20 years without a recurrence, could you have the port out then?  If that's a fair answer then it's not "never". You've gone at least 8 years with a tumor you could feel and it hasn't spread- according to the PET CT scan. Right now you ARE a winner. Like you say, its a crapshoot, no one's giving me any guarantees either.  Are you doing the Tamoxifen thing?  Zometa?  What a cheesehead.  I'm sorry you had to deal with that.  I'll go get my 2 x 4.

nelia48

Rachel, you always make my day!!!!!  You just have to take this guy with a grain of salt!  He's definitely NOT one you would want by your bedside when you are dying, that's for sure!  I think his "never" was sarcastic, as he did say 5 years a while back.  I think he trying to shut me up and face the reality that just because I feel good doesn't mean it won't come back.  What he doesn't know is that I AM very reality based and know all the odds.

 I'm on Arimidex.  Hate it, but I'm doing it religiously!

And keep that 2 x4 handy!  I might need it!

Mary22

Nelia, how is  Arimidex? I may go on that after I have my ooph. I am waiting for surgeon to call, he said if I did not hear from his office to call by Wed. They are trying to squeeze me in , b/c according to him my ovaries should already be sitting in a path lab.

I go see rad onc on thurs, the only reason I am going is b/c of severe pain in my back, right behind where rads was.

I got some school clothes shopping done, 1 down one to go, I may try to tackle my son tomorrow. Not him, shopping for his clothes. He has grown soooo much he will need everything!!!!

Have a great night.

nelia48

Mary, I'm doing alright on the Arimidex.  My only complaint is the night sweats that keep me awake.  But it does seem that that is calming down some.  I'm trying to figure out what triggers it -- what I eat, stress, etc.  Sometimes it's horrible, other times I'm ok.  There is a thread somewhere on here about Arimidex.  Some gals are really complaining about bone and joint pain and other things, others seem to be doing ok.  According to my oncologist, right now my complaints do not merit quiting.  He feels I would benefit way much more if I keep taking it.  I've heard that the tamoxofin has worse side affects.

SusieMTN

Rachel_BC  Can you come with me to see the surgeon again and bring that 2X4, he apparently needs a lesson in bedside manner or at least loan it to my sister who I will have to take muzzled as who knows what may come out of her mouth. This is the doctor who told me my cancer was coming back, while all my Onc's said no just radiation skin, very normal!  Incision opening up after radiation not unheard of, its from the Radiation!  The last time I saw him I cried for days, this time I may op'ed for kicking him in the "nads!

Is it murphy's law or what that when you need your doctor they are off or on vacation! 

nelia48

Looks like Rachel can start a business here renting out the 2x4!!!!!!  When I told my sister what my Onc said, she was really mad, too.  Funny thing, I was mad that he said it, but when my sister got mad, I found myself defending him.  I tried to put it into context:  I bugged him again about getting the port out, asking, "When can I get this thing out????!!!!"  He rubbed his bald head and said, "LOOK!!!!  Most likely, because of the severity of your cancer and how long you let it go, it will come back.  We have to face reality here.  You CAN'T have the port out -- ever!!!"  He was trying to get a point across to me, but in doing so, he flushed my future down the toilet!!!!!

Susie, the swift kick sounds like a good plan!!!!  I'd love to be a fly on the wall when you do it!

Rachel_BC

nelia... "he rubbed his bald head" eh?  "Never" is when his hair is growing back... he's probably jealous yours WILL!  But with the fuller explanation I did put the 2 x 4 down.  

susie... i know so little.  All of what you say sounds extraordinary. The runaround you are getting sounds bad enough to suggest you get a second opinion at the very least!

TorchSong

Hi all--I've been so crazy busy nad dealing with other stuff, I've neglected my buds here! I have missed you!

Nelia, that surgeon clearly failed Bedside Manner 101! I wish the docs knew that it's not necessarily what they say but how they say it that matters...

I'm doing OK..starting to ease back into my crazy life. Had an emotional weekend--was at a conference where my ex and her new honey were also. Funny thing is, after the first awkwardness (I had known they were together and would be there, there was no shock or suprise), we got along well, sitting together in worship and workshops, etc. Other people seemed more worried about it than we were...It was tough for a bit, but as I said to myself, "We're still friends, I wouldn't go back to where our relationship was anyway, I want her to be happy, so let's be adult about it. Heck, I made it through chemo and radiation, I can live through this."

 I'm off to Washington DC for a week's vacation visiting family and friends! I cannot wait! A lot of people haven't seen me since my dx and want to spend time together. I think it's that realization that life really isn't forever. One friend it hit really hard--he insisted on buying my ticket and on me staying with him. A mutual friend says my visit is all he's been talking about for weeks.

It's nice, but I sort of want to say, "Don't wait until someone has a dx...just appreciate and spend time with your family and friends NOW."

I'd better get back to work before I sound like an HBO movie!

Hugs to all!

Martha

Mary22

Hello all.

SusieMTN

Hi girls, well things couldn't have gone better, no kicking needed nor did I have to pull out the 2x4!   So I think the surgeon may be one that "thinks out loud" rather than think and THEN speak. I showed him my ever increasing "hole" in my incision and told him it just about doubled in size in both areas in just about a week.  And he sort of said well if we biopsy it may breakdown and we will end up with a worsened situation blah blah blah and goes on to say how it may be cancer again.  I stopped him and said well the last time you told me this I cried for 4 days so with my diagnosis and the possibility of Inflammatory breast cancer we need to act fast so if you think there is any possibility of a recurrence we need to do a biopsy fast so I can go back on Chemo if the need be, this is upsetting to me.  He looked rather like he realized he didn't handle things right and then said Oh I don't really think this is a return of cancer but just that there is a remote possibility, I don't really think it is, what you have going on is not uncommon with radiation!  So my surgeon will hopefully be back by then and will take me in surgery and cut away the dead non healing tissue and I will be good to go!

So I am here returning the proverbial 2X4, use it wisely!

Hello Mary.

Mary22

Good Luck Susie!

BooBee

Sorry Susie.  I know what you mean.  I've been having problems breathing for the past 3 weeks and finally went in to see PCP who did an xray.  She was busy so told me she would call sometime the next day.  Well crap.....you can't do that to someone that had cancer.  I was up all night long organizing my life for chemo again.  No cancer in the lungs but I still can't breath. 

I'll barrow the 2X4 for awhile if no one cares.

Keep us posted on the hole.

Mary22

I go see my rads onc today, maybe I can get some answers as to why I still have pain in me ribs. All the other drs. have said it is normal.

Rachel_BC

Susie I am so glad you are back in a comfortable place and really happy you sorted out the issue with the doc... He's got that thinkitsayitwithoutthinking thing.  Sheesh.  And GOOD FOR YOU that you OPENED YOUR MOUTH AND SPOKE TO YOUR FEARS.  That's just brilliant.  You didn't go nuts, you just accurately defined the issue.  That is SO difficult!  That's when we are being women, right?  We deal with the dirty stuff.  Well done.  Still this thing with the hole is pretty whacked.

Renee- so you did get the results and you know its not cancer?  What's the story with the trouble breathing?  I know you have been under a lot of stress recently, and the oomph.  You are welcome to the 2 x4.  I got plenty here- it's NYC ya know. 

Mary I love the pic!  Rib pain does sound familiar

Mary22

Ok, rads onc wants me to have a bone scan and a ct. fun, fun. Then on Aug 4 I go for my ooph.

SusieMTN

ReneeS: So how are they explaining the breathing situation, it isn't something simple like asthma or allergies?  The reason I say that is a friend of mine who has had breast cancer (2 times) had no allergies or asthma until after her chemo's/radiation and then developed a bad case of Asthma/Allergies. Thought I'd pass that along.  I know for me my mind doesn't go to simple it goes to the worse case!   Here is Rachel's 2X4! 

BooBee

Susie...Asthma is a possibility I considered.  I'm hoping to get into the Dr this week before our one week camping trip. How long can I keep the 2x4?

Mary22

Good luck Renee, I had my bone scan and CT today. I initially thought the pain was from my asthma or my allergies as it first appeared during allergy season for me. Now I am a bit scared!

But I have to hhave faith.

BooBee

Good luck to you too Mary.  I have no pain with my breathing problem.  I can't get a Dr appointment for a month.

With asthma do you feel it in your chest and throat or your lung area?

Mary22

I feel a tightness in my chest, and difficulty taking a deep breath. Sometimes before an attack, I feel a slight pain in the lower area of my lungs.

Good Luck.

I have to wait two weeks for my results, but I am going to try to get my other dr to get the results from the hospital.

Rachel_BC

Hey ladies.  Man i am sorry about the waits for both of you, that's really insane. I've just been busy with normal life stuff, just a whole lot of it.

Many hugs 

Mary22

My CT came back clean, so I just have to wait for results of bone scan.

The waiting is the hardest part. Tom Petty, said it best.

Rachel_BC

Mary- YAY Clean CT scan!!!

Mr. Petty also said "Don't let it get to you"